anna's blog

Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

No more medicine

We were at sick kids yesterday for Anna’s monthly four hour pomidranate infusion (bone strengthening treatment). Her bloods were checked and her white blood count was so good that the doctors decided she could stop taking the last two preventative medicines – Septrin (anti-viral) and Posaconazole (antifungal). So she is not on any medicines at all. I’m hoping we see a continued improvement in her general well being, as well as her skin settling down (possible side effect of posaconazole).

This also meant she could have her NG tube removed as it was only used to give her septrin. Having her NG tube out is a major step. She’s had one in for more than 2 years. Anna was most excited about now having a face painting butterfly done on both sides of her face now.

Before…

20140516-211831.jpg
And after…

20140516-211927.jpg

Advertisements
5 Comments »

Final day of treatment

20140205-200118.jpgToday is officially the last day of Anna’s treatment for leukaemia.

It is two years and two months since her diagnosis. She has had oral chemotherapy for most of those 789 days, regular intravenous and brain/spinal fluid chemotherapy, lumbar punctures, daily/weekly/monthly steroids and numerous blood transfusions.

She’s had a portocath put under her skin, a feeding tube down her nose and one very unpleasant bronchial wash.

She has been on antibiotics, antivirals, antifungals, antiemetics and a cocktail of other drugs to counteract the side effects of all of the above. She has had IV fluids, electrolytes, overnight liquid feeds and saline drips.

Pain relief has ranged from calpol to morphine.

She is a frequent visitor to x-ray, and also had ultrasounds, ECGs, CT scans, MRIs and a bone density scan.

She is known to many of the departments at sick kids – neurology, endinocrology, respiratory, orthopaedic and oncology.

I’ve lost count of how many nights we’ve spent in hospital or how many outpatient appointments she’s had.

She still had some walking ability when she was diagnosed but now she isn’t able to bear any kind of weight at all. Her bones are like tissue paper and break with the slightest trauma. She has had seven fractures (femur, knees, ankles, feet, wrists). We have no idea if she will recover any strength.

She’s also had three bouts of shingles, staff epidermidis (at least twice), kiebseilla, para flu, cellulitis, mouth ulcers, UTIs, aspergillus, rsv, septic/deranged liver, various other bacterial/viral infections and an extremely severe skin reaction. And there have been a couple of times when we thought she might not make it.

Although today is a day of celebration, it’s also something of an anti-climax as her steroids were stopped some months ago due to her getting continued infections. She had her last dose of chemotherapy over a week ago as it was stopped due to her low platelets and currently we are in sick kids as she has several infections. She had a platelet transfusion this morning and needs a red blood cell transfusion tomorrow. She’s also had her monthly 4 hour pomidronate infusion today today – her bone strengthening treatment.

She was due to have her final bone marrow/lumbar puncture done today but wasn’t well enough. It will probably take place next week. She still needs to have one catch up intrathecal/general anaesthetic, likely to take place on fifth of March. We will continue to come to clinic regularly and she will be having pomidronate monthly.

However, we are glad to get to today. She is still my beautiful, gorgeous daughter and now we can start planning for the future – Anna, me and Nathan. X

9 Comments »

More shingles and another fracture

20131106-202100.jpg
Anna’s shingles looked like they were beginning to clear up by the end of last week so she came off her aciclovir (anti-viral medication) and hyperhydration. Everything seemed okay but then over the weekend new spots appeared. So, on Monday she went back on the aciclovir. The anti-sickness medication continued and she’s back on hyperhydration (aciclovir can be quite toxic to the liver so they hyperhydrate to flush it through). It might be another five day course or longer – it depends on how quickly the rash starts to clear up.

Her gripper site (where the gripper needle plugs into the port-a-cath under her skin to give her medicines and fluids intravenously) has shingles around it and was inflamed, bleeding and oozing fluid. Her gripper was taken out for a short period to see if it could recover. If not, she would have needed a cannula in her hand. Neither reinserting the gripper into a sore and open wound or having a cannula put in were attractive options. However, she needed one of them done as otherwise she wouldn’t be able to have anything intravenously. so she was very brave and had the gripper put back in. I think it was very, very sore

20131106-210438.jpg
Anna’s bones are so thin and weak that slight pressure exerted in the wrong place can cause a fracture. She woke up on Friday morning with a sore knee. The doctor examined it and she was sent to x-ray. Although initially there was no sign of a fracture, closer inspection revealed a small undisplaced fracture just above her knee in the growth plate. So although the cast on her arm was taken off on Friday, she was only cast free for about an hour. After a lot of discussion with the nursing team we now have a very detailed care plan in place specifying exactly how she is to be moved for toileting or going into her wheelchair, specifying how many people are involved and when the hoist is to be used.

20131106-210318.jpg
The daily weekday routine includes a visit from the hospital and outreach teacher, a session with the physiotherapist, discussion with others such as the dietician/dentist, a visit from various doctors (oncology, orthopaedic, general registrar) as well as regular medication (she is currently on metoclopramide for sickness, Oramorph on request for pain, cholecalciferol – vitamin d, posaconazole – antifungal, aciclovir – anti-viral, potassium – blood levels are low) and observations. She is also still having an overnight feed through her NG tube as her appetite has not picked up.

20131106-210758.jpg
Her red blood count is still low so she has had 2 blood transfusions in the last week. Her platelets are extremely low so she has had a platelet transfusion. She is neutropenic (her neutrophil count lower than one so she is unable to effectively fight infection). Her liver function has not been good but has not deteriorated further.

Despite all of the above, she is mostly smiling, laughing and singing. She’s in bed tonight with everything she needs – her new doll Emily (thank you Jim), piggy, sick bowl, NG tube with feed, IV tube with fluids and Disney princess blanket.

20131106-212425.jpg

6 Comments »

… And a fractured ankle…

Anna’s shingles are not too severe and she is recovering well. However, the treatment for it (IV aciclovir) is causing her extreme nausea and fairly frequent vomiting. She feels absolutely rubbish.

Her right leg has looked a bit odd and I asked the physios and doctors to check it. She had it x-rayed and it is fractured too. Just like her wrist, it has happened at least a couple of weeks ago and is now already healing. It is slightly displaced but fortunately should become straight as she grows and the bone develops. Her muscle looks like it is starting to waste which is a serious concern. Physio are coming back tomorrow to review it.

Her blood results have dropped today and she’s had a blood transfusion this evening. She is still getting massive amounts of IV fluids (electrolytes). We’ve tried to give her usual feed over the last few nights but she is simply not tolerating it at all. These are all her tubes and bags hung up, attached to either her NG tube or port a cath (direct into her bloodstream).

20131029-234619.jpg

Although she is appearing quite well in herself (apart from feeling so sick all the time), there are lots of things happening. None of it is enough to cause serious concern at the moment but as usual we’re watching very carefully. Luckily she’s had auntie Clare and granny here at various times today to keep her amused and distracted.

Just now, she is coughing, has just vomited and is waiting for her next dose of aciclovir along with antiemetics. She can’t get comfortable and feels so nauseous that we’ve asked the doctor to look at her. Her stomach is severely distended. I’m hoping that both Anna and I have a good nights sleep but I think it’s extremely unlikely.

20131029-234708.jpg

9 Comments »

One year on

20121205-224300.jpg
Anna’s leukaemia was diagnosed exactly one year ago.

I remember it clearly. Anna had been losing strength and mobility in her legs for a month or two. We were all puzzled as her Spinal Muscular Atrophy (diagnosed only 5 months earlier) should not have led to such a rapid deterioration. She had seemed increasingly tired and pale over a number of weeks, even months, and was complaining frequently of aching legs. All classic leukaemia symptoms, we now know. We just weren’t looking for another rare condition.

I had taken her to the doctor for a blood test earlier that day, and at teatime we got a call from him. He told us that the lab had just looked at Anna’s bloods and we were to take her straight to Edinburgh sick kids. I asked if she might become seriously ill if we didn’t hurry and he said she was already seriously ill. I also asked him if he thought we might have to stay overnight, and he said probably. Anna didn’t really leave that hospital for almost 6 weeks.

We went straight to A&E. Looking back, all the medical staff we met through the evening must have had a good idea of what we were about to be told. I think they were just checking results and getting ready to admit us to Ward 2, the oncology ward. Anna was clearly very ill by that point.

At around 11pm, Anna and I were taken up to the ward where, very gently, we were told she had leukaemia. I still get upset when I think about that night. Almost as bad as the diagnosis itself was having to phone family and friends to tell them the dreadful news.

One year on, Anna has spent around 3 months of the year as a hospital inpatient. I’ve lost count of how much time she has spent as an outpatient, or at clinic, or with the outreach team. We’ve spent Christmas on the ward, learnt about medical procedures, developed a range of new skills with ng tubes and feeding pumps and got to know the whole team who work so hard to make Anna and the other children better.

We’ve had terrifying ambulance rides, and times where we didn’t know if Anna would make it through.

Our family life has changed in ways we never imagined.

But we have also been overwhelmed by the help and support given to us. Not just friends and family, but from charities dedicated to helping people in our situation and also complete strangers. We have entered a whole new world of ill children and those who commit themselves to making life better for families in our situation. We have had to learn that it is ok to ask for help and that many people genuinely want to give it.

On a personal level, what matters to me has changed. Life is for living, enjoying and appreciating, with friends and family.We never know when it may be taken away from us or the ones we love. And I am constantly reminded that however bad things are, we are blessed to still have Anna with us. Not everyone we meet has been as fortunate.

Anna’s drug regime continues. She will still be on chemotherapy and steroids for the next year, plus antibiotics and anti fungals for even longer to protect against infections.

Tonight, Anna is probably better than she has been for many months. She goes back to nursery tomorrow. We are hoping to spend Christmas out of hospital and to lead as normal a life as possible.

As always, thank you to everyone.

20121205-224326.jpg

5 Comments »

%d bloggers like this: